Cancer & Cidp
AnonymousMay 14, 2009 at 6:49 pm
For the past 3 weeks I have been receiving daily radiation treatments and I wear a chemo pump with 5FU in it that I receive 24/7. I only have 7 more treatments left but I was wandering if anyone else has dealt with cancer and cidp at the same time and how your body reacted to the treatments. I have never had any treatments or pt for my cidp because I did not have insurance when I was finally diagnosed. My condition is much much better than when I first had symptoms 4 yrs ago but has been at a stand still for the last 3 yrs not getting better or any worse. I am seeing a new pain management doctor that has prescribed some suppliments she wants me to take to help with the cidp. She said she has a cidp patient that is already getting some of his reflexes back. The nutrition store I went to was out and waiting for a new shipment to come it so as soon as they come in I will begin trying them.
AnonymousMay 14, 2009 at 11:14 pm
Hi Gloria! They found me with thyroid cancer last year and I had to have my thyroid removed. But my cancer was not the really really bad kind and I only had to get Radioactive Iodine treatments and 1 Radiation Treatment. I too have CIDP with Lupus causing the CIDP. And gosh was I awefully sick last year. A little better now than I was last year. Then to try and get the CIDP controlled they tried me on Rituxan and I only got one of those. Could not tolerate the Rituxan. Now they are going to try me on Imuran. I hope that works. Right now they have me taking prednisone/ But even with the prednisone the CIDP and Lupus is still lurking. Although our treatments are different we both had cancer and had to be treated. Lets just say that last year I thought I was dying! I have been sickly for many years and seen a few times where I was in danger with my life. But last year I suffered something aweful! Could barely use my hands and my legs were on fire having to use wheel chairs and walkers and today even though I am not 100 percent better, I can at least say I am 50 to 70 percent better! Varies on the day and what I do during the day. Not sure what type of cancer you have but some cancers can cause CIDP. After the treatment depending on the type of cancer you get better. But it depends on that cancer you have.
That radiation and chemo mixed is no fun picnic for anybody! Everybody I have been around that had to have noth treatments were pretty darn sick for quite a while. Some pulled through and are now doing great while others the cancer was to far gone and they didn’t make it through. Basically because the cancer was terminal type. If they got everything out and now the Chemo and Radiation are required you will be sick for a while. But after the last treatments you will start regaining some strength back. It might even make the CIDP better. Just depend on the patient and what they have going on.
So deeply sorry to hear of your suffering and will keep you in my prayers. Being sick is not fun and having CIDP or any type of Nerve Damage stuff is a bad experience for any of us. I wished they had one miracle pill that would get us all well! I wish you my best dear and do hope you get better! Hugs
AnonymousMay 16, 2009 at 9:12 pm
Hi Gloria …
I am so sorry that you are dealing with both of these horrible conditions. I have CIDP but my mom had/has breast cancer and I saw what she went through with hers and I can’t imagine dealing with both .
I hope you are able to kick cancer and are able to get the CIDP under control . My prayers go out to you ! Hope you feel better soon ! 😉
AnonymousMay 17, 2009 at 5:27 pm
I have had the cidp since 2005 we arent really sure what triggered it, could have been the virus I had or the surgical procedure, both around the same time so cant pin point it. I have rectal cancer that has invaded the vaginal region so after recovering from my treatments I will be having a permanent colostomy and a partial vaginectomy. I stay so scared that with every procedure I will have a relapse but so far I have steadily gotten a little better so maybe I will continue to do so. I am down to just 6 more treatments and then on to the next step to my recovery.
I too deal with the burning in my legs and feet and I am in a wheelchair, I am only able to use my walker for short distances and walk unassisted for only a few feet. The foot drop and loss of balance are my biggest issues at this time.
AnonymousMay 18, 2009 at 2:43 am
That is about what happened to me. I had a severe attack on my nervous system right after having surgery. I still swear it was GBS but they never checked me out that good when it first happened. It took them 6 months of waiting to get into Duke and then they said it was CIDP. I had surgery on my spine and two weeks later ended up with the attack. But I have systemic lupus and they are saying my lupus caused the CIDP. I still swear the CIDP came from having that surgery. Have not been right since I had that surgery. But I had nerve damage already before the surgery. I think the surgery though triggered the massive attack on my body! And yes! I am like you when it comes to surgery. Scared to death it will happen again! Twice after a surgery that involved the nerves I had an attack like this. But Lupus can attack a person with stress, weather and surgery. And then after the attack they found thyroid cancer and removed it. The cancer was mild and in one certain place.And had not spread. Thank goodness for that. Two surgeries I ended up last year besides my spine. Rough year! But am improving some but not much! I wish you the very best and pray they get you straightened out. Not fun to suffer! I will be praying for you and please keep us posted on your recovery! Sending you a huge hug!
AnonymousMay 18, 2009 at 9:20 am
Sorry to hear that you are going thru cancer treatments as well as CIDP. Either one is enough on its own! I had CIDP and then was diagnosed with breast cancer. I had the full gambit of chemo, surgery and radiation. If you only have 7 more treatments left you have endured a lot already! For me the worse part was the fatigue. It seemed to be cumulative over time. I took lots of naps. I convinced myself that I healed better while I slept! As part of my chemo I received cytoxan which actually helped my CIDP. I managed to walk over a mile in the Relay for Life walkathon this weekend. It does get better when the body has time to heal itself a bit from all the “assaults” it had to endure with the cancer. Make sure you celebrate your last treatment! If you have any specific questions feel free to PM me. Congrats on completing your radiation!
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